4
sustained a disability, thereby undermining the support necessary to assist him or her in adapting to life with a disability (2). Return to work and other previously held social roles might not be possible following injury, contributing to further disruption and stress within the family. Osberg and colleagues (12) suggest that with the necessary systems of support, family members can avoid some of the psychosocial problems that arise from car-ing for a family member with TBI.
Clinical practice, programs, and research in trau-matic brain injury medicine have grown significantly over the past 35 years. Persons with TBI and their families, however, have reported the service system is “unorga-nized, uneducated, unresponsive, and uncaring.” (13) A parent of a child with brain injury writes, “Another area of concern is the insufficient numbers of caregivers with training in ways brain injury differs from other neu-rologically impairing conditions. . . . Until caregivers bet-ter understand the cognitive and behavioral changes and learn more effective methods of dealing with deficits resulting form injury to the brain, we’ll still be where we are today” (14). On a national and more general level, the Institute of Medicine (IOM) report, “To Err Is Human:
Building a Safer Health System,” notes the importance of communication among multiple providers and the need for standards for training and certification especially regarding safety and prevention of medical errors. At pre-sent, however, there exists no formal training or certifi-cation for medical health care providers within the field of brain injury medicine. Only recently has there been certification of brain injury care providers, those provid-ing post-acute care within the community.
This chapter will review the state of the field regard-ing accreditation for programs, as well as trainregard-ing and certification of health care professionals and paraprofes-sionals providing front-line care and support in the community.
PROGRAM REVIEW AND ACCREDITATION An initial attempt at standardizing rehabilitation care and assuring quality care was program evaluation and accred-itation through the Commission on Accredaccred-itation of Reha-bilitation Facilities (CARF). CARF was established in 1966 to ensure quality services for persons with disabilities and others receiving rehabilitation services. Improved safety, value, and quality of care of persons receiving services are a part of their mission. It is an international nonprofit accrediting body that accredits providers for specific ser-vices (e.g. behavioral health, employment and community services, medical rehabilitation). CARF standards are developed through leadership panels, advisory committees, focus groups, and field reviews. Persons served are also involved in the development of CARF standards.
The standards for brain injury programs were first offered in 1985, focusing on inpatient rehabilitation pro-grams. Outpatient programs standards for accreditation were obtainable in 1988. Presently, there are standards for a variety of brain injury program services, beginning with inpatient rehabilitation at multiple levels and transition-ing to residential and /or vocational services. CARF accred-ited programs serving persons who have sustained brain injury include over 100 inpatient rehabilitation programs, about 140 outpatient programs, more than 300 residen-tial programs, almost 50 community services programs, and more than 70 vocational programs. Standards cover adult programs and programs for children and youth.
CARF has been responsive to the changing service needs over the last 25 years. As new services developed in the field, the Board of Directors has supported devel-opment of new standards. Standards are reviewed and updated on a routine basis. Program standards specifi-cally for brain injury programs have provided some sem-blance of consistency for certain program elements, and are an initial step in assuring high quality care for persons who have sustained brain injuries.
MEDICAL AND HEALTH PROFESSIONAL CARE PROVIDERS
Brain injury rehabilitation has been provided for over 35 years in the United States, initially as a part of a larger reha-bilitation program, and, increasingly since about the 1980’s, as dedicated programs. Service provision has moved beyond hospitals and clinics, and into residences and communities. Advancements of medical science and vast improvements in medical and surgical care have pre-saged the growth of knowledge and practice. Patients often require the services of an interdisciplinary treatment team consisting of physicians, physical therapists, occupational therapists, speech language pathologists, rehabilitation counselors, psychologists, and social workers among other professional and paraprofessional staff. Interdisciplinary rehabilitation team members are typically guided by a set of standards of ethical practice for their particular profes-sions (15). Physicians and health care professionals have risen to the challenge to provide high quality care, although subspecialization within disciplines has been acknowl-edged by acclamation and not certification.
Health professionals require standard training and licensure. Requirements of education and training regard-ing traumatic brain injury within each discipline now exist, although implementation may be uneven. Health profes-sionals often gain experience by sharing information through team interactions, mentorship, or courses. Train-ing and licensure for professionals does not require specialization in the care of persons who have sustained brain injury. There are no certification programs for
TRAINING AND CERTIFICATION OF CARE PROVIDERS FOR PERSONS SUSTAINING TBI 29
specialization in the care of persons with brain injuries.
Most disciplines do not have certification, but rather spe-cial interest groups in professional organizations (e.g.
speech and language pathology). And where there may be special certification or plans for certification (e.g. physi-cal therapy, psychology, occupational therapy), it is not specific to brain injury medicine or rehabilitation, but to a more general rehabilitation or components of a TBI service need.
The need for training and certification has been rec-ognized increasingly nationally and internationally (16–19). The need to protect the public has been high-lighted through the IOM report. The American Board of Medical Specialties (ABMS) has acknowledged this responsibility, and subsequently enacted implementation requirements of each member Board. These require pro-grams of Maintenance of Certification within all repre-sented specialties, and that subspecialty certification be reviewed through a vetted process.
There is a trend to formalize physician training in the management of persons who sustain brain injury.
Physical Medicine & Rehabilitation (PM&R) residency programs developed formal training in Brain Injury Med-icine during the 1980s and 1990s. A questionnaire survey report of PM&R residents and program directors con-ducted in 1991 concluded that two-thirds of programs either offer a formal rotation or require residents to par-ticipate in a clinical rotation in brain injury medicine (20).
The findings of this and other surveys supported a need for more training in brain injury medicine for residents, including additional training sites across the continuum of care (19, 20). Bell and Massagli (19) reported that PM&R residents endorsed the position that a rotation in a skilled nursing unit providing services for individu-als with brain injury offered unique clinical experiences.
Currently, all PM&R residents must have formal train-ing and competency in brain injury medicine, which is mandated through the Accreditation Council on Gradu-ate Medical Education (ACGME) program requirements.
Basic requirements for certification in PM&R include suc-cessful completion of an ACGME approved residency in addition to passing written and oral American Board of Physical Medicine & Rehabilitation (ABPMR) examina-tions. Because PM&R training and examinations require substantive coverage of brain injury medicine, certifica-tion in PM&R conveys a basic competence in brain injury medicine (BIM).
Beyond basic competency, there also exist formal (but not ACGME approved) Brain Injury Medicine Fel-lowships in PM&R. These felFel-lowships and advanced clin-ical experience at academic and brain injury treatment centers provide the underpinnings for further expertise in BIM. The Brain Injury Special Interest Group (BISIG) of the American Academy of Physical Medicine & Rehabil-itation (AAPM&R) supports these efforts. The BISIG
organized the development and writing of curricular materials for brain injury medicine fellowship programs.
This material has been utilized by fellowship training pro-gram directors and mentors to provide structure and didactic content to fellowship training programs in exis-tence or under development. The document has been updated, most recently in 2003.
Beyond PM&R, a number of other specialties engage in elements of brain injury medicine. Foremost among these are neurology and neurosurgery. These programs are most frequently focused on the immediate acute issues or subse-quent co-morbidities (e.g. seizures, increased intracranial pressure). The clinical experience in post acute brain injury medicine is not required. Although some programs support this experience, the focus and intensity is widely variable.
In general, the route to significant clinical participation in post acute Brain Injury Medicine is through fellowships, a limited number of which exist. These fellowships are not ACGME approved, nor is training sanctioned by their spe-cialty Boards. Post residency training for neurologists is available in a number of fellowships providing clinical management and diagnostic experience across a variety of neurological diagnoses along with the associated therapy interventions.
None of the aforementioned fellowship programs are accredited through ACGME and there is no formal subspecialty certification in Brain Injury Medicine through ABMS. Therefore physicians who have com-pleted the additional year of study are not formally cer-tified by any ABMS Board.
The American Board of Physical Medicine and Rehabilitation is developing a Brain Injury Medicine sub-specialty proposal for ABMS approval. The rationale for establishing this subspecialization is:
• To provide core competency standards of training for the evaluation and treatment of patients with brain injuries;
• To provide a high level of care for patients with acquired brain injury and their families in hospital and outpatient settings, and over the continuum of the process of recovery;
• To provide physicians with brain injury medicine administrative skills for activities such as program development, quality assurance, facilities planning, standards-setting;
• To promote and strengthen research for the advance-ment of the clinical science of brain injury medicine, including prevention, treatment, and restoration of function and outcomes research;
• To increase the number of expert clinicians, teachers, and investigators dedicated to the care of survivors of brain injury.
• To recognize physicians who have successfully com-pleted additional training in brain injury medicine
programs beyond the primary residency training education in physiatry or neurology.
• To improve education in brain injury medicine for residents in physiatry and neurology, residents in other training programs, medical students, practic-ing physicians, and other medical personnel.
• To generate academic interest in the physiatric and neurological professional societies.
The formal process requires discussion and vetting through ABMS. The intention of ABPMR is to have an inclusive process with an opportunity for all physicians practicing Brain Injury Medicine to have access to the cer-tification process.
There are many disciplines involved in the ongoing care, medical management, and rehabilitation of persons who have sustained brain injury. Although there are expert clinicians in the field, there is no formal certifica-tion for any of the professionals involved. Consumers and their families have made a strong case for the requirement of well trained and certified health care providers in the field of brain injury medicine.
COMMUNITY CARERS AND PARAPROFESSIONALS
Following discharge from the acute or sub-acute setting into the community, many persons with brain injury require ongoing care. Brain injury is a lifelong injury that impacts function across the lifespan. Support needs are typically very high, although social networks generally consist of only family members and service providers (13).
Oftentimes, persons with brain injury continue to require the services of a multidisciplinary treatment team. Unfor-tunately, these services are often spread among several different provider agencies, making coordination and continuity of service a management nightmare.
Unlike the pre-existing community services for per-sons with mental illness or developmental disabilities, developed in the 1970s as part of deinstitutionalization, community services for persons with brain injury are rel-atively new. Further, attempts to “fit” persons with brain injury into pre-existing community service models (i.e.
those for persons with developmental disabilities or men-tal illness) have attained limited success toward meeting the needs of persons with TBI. These factors contribute to the serious need for specialized training to meet the var-ious needs of persons with brain injuries, caregivers, and their families.
Post-acute community based brain injury rehabili-tation is not only a relatively new field, but is also impacted upon by misconceptions, cultural diversity, and inaccurate knowledge about TBI among community ser-vice providers. Many of the individuals who live in the
community today would have likely not survived their injuries 25 years ago (16). The developments in emer-gency medical procedures, medical technology, and neurosurgical techniques, have sustained the lives of persons with brain injury, as the community services available for them are being established.
There is limited literature discussing the need for for-malized training of providers of TBI services. However, the literature that is available speaks to the need for spe-cialized provider training. The individuals who provide care to persons with TBI residing in the community are most often family members and direct care staff. Paid helpers can often lessen the stress placed upon family members, assuming the paid helper understands the nature of the injury and its sequelae.
Research on paid care work as it applies to persons with brain injury is virtually absent from the literature.
McCluskey (21) found that agencies needed to increase efforts to train and orient new staff to the types of chal-lenges they would face working with persons with brain injury. She also suggested that persons with brain injuries would benefit from closer contact between professionals and paid caregivers. Given the restrictions funding sources impose on treatment programs for persons with brain injuries there may be limited opportunities for pro-fessional intervention, placing greater emphasis on the importance of training care givers to implement activi-ties to improve the functional performance of persons with brain injury (22).
The specific educational need areas that have been identified include several areas integral to the provision of rehabilitation services to persons with brain injury including; treatment of cognitive deficits, family and social issues, behavior modification techniques, and adjustment to brain injury (16, 18). The literature has also differentiated between the types of training and knowl-edge required by professionals and paraprofessionals and those with direct versus less direct care of the person with brain injury.
A demonstration project through the New York State Department of Health responded to the need for education of care providers and support for this difficult to serve population. Experts in the field of brain injury rehabilitation developed support for persons with brain injury, family members, friends, and community support staff. Additionally, the program offers an “apprentice”
aspect that allows caregivers to receive intensive, con-textualized training and coaching, enabling them to better serve persons with brain injury. The results of a prelimi-nary cost-effectiveness study of the program (23) suggest that community supports for persons with behavioral issues resulting from TBI can be provided in a cost-effective manner, although recommendations are made for a sys-tematic analysis of quality of life indicators before broader policies and programs are established.
TRAINING AND CERTIFICATION OF CARE PROVIDERS FOR PERSONS SUSTAINING TBI 31
The lifelong sequelae of TBI often exhaust private insurance funding streams early in the rehabilitation process. Therefore, public programs such as Medicaid and Medicare often become the primary sources of pay-ment. Several states have established waiver programs for persons with TBI. These programs offer opportunities for designing integrated service plans for individuals with brain injury who would otherwise require some type of inpatient care. Care needs usually include support for spe-cialists in case coordination and behavior management, not otherwise funded through typical private insurance.
New York State’s TBI Waiver Program offers long-term support focusing on post-rehabilitative care. The services offered by the waiver program are fashioned to offset several of TBI’s sequelae. The services include: Service coordination, home and community support services, non-medical transportation, specialized non-medical equipment and supplies, home modifications, intensive behavioral sup-ports, community integration counseling, substance abuse counseling, day programs, and independent living skills training. The services are based in a philosophy of indi-vidual choice, while accounting for the accompanying real-ities of needs, health and welfare issues, and budgets. One of the major challenges faced by provider agencies across the state has been the difficulty to attract and retain qual-ified staff. This may be a result of the lack of understand-ing of the behavioral and psychosocial sequelae associated with brain injury.
American Academy of Certified Brain Injury Specialists
A 1990 survey of 565 acute, subacute, and post-acute programs regarding the training needs of licensed and non-licensed staff brain injury services noted that seventy-five percent of the respondents (45 percent response rate) indicated that specialized training is needed for licensed staff, and 84 percent indicated that training is needed for non-licensed staff. This was further supported by Becker (18) who reported that respondents to their survey about edu-cation and training needs for staff endorsed specialized training for paraprofessionals, even more than for pro-fessionals.
As a result, the Brain Injury Association of America established the American Academy of Certified Brain Injury Specialists (AACBIS) as a standing committee of the association to address training needs. AACBIS oper-ates under its own by-laws as approved by the Board of Directors of the Brain Injury Association of America.
AACBIS Committee members are experienced profes-sionals in the field of brain injury rehabilitation who volunteer their time and expertise to developing a certi-fication program that meets the needs of the brain injury community. AACBIS currently offers certification for Brain Injury Specialists. The program is governed by
AACBIS and is administered by the Brain Injury Associ-ation of America in McLean, Virginia.
In 1996, AACBIS was established to assure the high-est possible standards of rehabilitation and care for persons with brain injuries. The AACBIS is the only orga-nization offering specialized training and certification programs for care givers of persons with brain injuries.
AACBIS offers national certification programs improv-ing the quality of care through the establishment of best practices for the education and training of individuals working in the field of brain injury services. The AACBIS offers a voluntary national certification program for both entry-level staff and experienced professionals working in brain injury services. AACBIS provides staff and pro-fessionals the opportunity to learn important information about brain injury, to demonstrate their learning in a writ-ten examination, and to earn a nationally recognized credential. Since its inception the program has certified more than 520 professionals. The AACBIS certification program is specially designed to address specific train-ing issues in brain injury services and complement other credentials.
The AACBIS program is divided into three levels:
Certified Brain Injury Specialist (CBIS)—Basic, CBIS—
Instructor, and CBIS—Examiner. The curriculum includes units in the following areas:
• Brain Behavior Relationships
• Functional Impact of Brain Injury
• Health and Medical Issues
• Philosophy of Treatment
• Children and Adolescents with Brain Injury
• Brain Injury: A Family Perspective
• Legal and Ethical Issues
Critics of the examination focus on it being knowl-edge based when many of the skills integral for effective work with this population rely upon technique. Carnevale (24) developed a model that was both knowledge and practice based. The model utilized a mobile team approach, educating caregivers and persons with brain injury on how to implement and sustain home-based behavior management programs. The natural environ-ment (e.g. home, community) brought to light the impor-tance of flexible interventions that addressed both client and care giver needs. Training programs should focus on the “real life” or functional impact that brain injury has on an individual. Ideally, trainers could incorporate a model that includes visiting the settings in which the care giving is taking place or at least viewing videotapes of every day interactions between the person with the TBI and his/her environment. In short, at least a portion of training must be contextualized to increase the likelihood of positive impact given the cognitive and behavioral sequelae of TBI. Training programs specifically fashioned
to provide knowledge and skills training regarding brain injury are needed to facilitate both the caregiver’s and the person with brain injury’s adjustment to providing/
receiving services.
SUMMARY
With advancements in research and science, there have been improvements in acute and emergency medical care, with a significant increase in the numbers of persons who survive brain injury. Residual impairments from the brain injury include a variety of conditions, however cognitive impairments are often the most difficult to manage.
Health professionals with expertise in brain injury medicine are required to provide ongoing services and support. Consumers and professionals recognize the importance of subspecialty training and certification.
Program accreditation has provided a base for deliv-ery of quality services at a systems level. Individuals providing those services should also receive appropriate training, and ultimately certification, to further assure high quality care and avoidance of medical errors. The estab-lishment of the American Academy for the Certification of Brain Injury Specialists (AACBIS) is a dynamic step toward addressing the needs and concerns of the brain injury com-munity. Subspecialty training and certification in brain injury medicine and rehabilitation should be considered across all disciplines serving the needs of persons with brain injury. Programs offering such training narrow the information gap between healthcare professionals in the tertiary care hospitals and those in the long-term care facil-ities, contributing to the integration of brain injury services across the continuum of care. Partnerships among profes-sional organizations, credentialing bodies, service agencies, and accrediting bodies must be forged in order to further integration of knowledge and skill sets into community based brain injury services.
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